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I have had really bad tremors in my arms and hands as long as I can remember. I can feel the jerking, twitching movement deep into my arms and tissue as if an earthquake is going off in my body. I was once thought to have Parkinson’s disease as I’m sure many of you have been misdiagnosed with.

My doctor when I was 13 said I would live my life looking like Katharine Hepburn with severe shaking. Every time I saw Hepburn in a movie growing up and saw her shaking I was scared to know that would be me one day.

I worked in retail at age 18 and when I would ring up a customer and hand the change back I would drop or what looked like throwing their change back. I cannot count how many times someone asked why I was so nervous. I had to explain to them that it was not nerves. When I do get nervous the tremors are severe.

Over the years I was prescribed pills which should have helped wit the tremors such as Beta Blockers. One doctor thought he struck gold when he prescribe me Beta Blockers. He was so excited and thought he had cured me tremors since he thought my heart and pulse caused the tremors. Turns out they did not help.

My old Neurologist thought I had some movement disorders. I now know that the Lyme, Fibro and coinfections can cause tremors. Now I know I am not alone and that there are so many others just like me in the Lyme community. Shaking and tremors are common symptoms.

For the past 4 years a new problem has come about. Not only do I have the tremors but now I throw or drop things a lot. I will be brushing my teeth and holding the tooth brush and my hand will jerk and there goes the tooth brush flying across the bathroom. I drop my razor while shaving and shampoo bottles go flying in the shower.

When I will nearly knock over something or drop it and go to catch it my tremors/jerks are worse and I end up making a bigger mess. It is like the old instinct to catch say my water bottle from falling over and spilling it kicks in but then my hands do not react the way I want them to.

If I sit certain ways in my chair my fingers will go crazy and shake violently. If I try to touch my pinky finger to my thumb the picky finger will shake rapidly.Holding my arms and fingers out straight, my fingers shake side to side very rapidly. I usually just hold my hands into fists all the time.

I call my hands my idle hands after the movie. In the movie this guys hands have a mind of their own and he cannot control them.

Depth Perception

I have noticed my depth perception is off also. I will reach across a table for an item and end up hitting or knocking over 1-3 other items I thought my arm cleared. I will reach for things and stub my fingers into walls or hard objects. I stubbed two toes last year on different days and broke both of them. I swear my feet were a good 6-8″ away from the objects my toes smashed into.

One of the many reasons I have stopped driving a car is due to my depth perception. I stopped driving from going in to a trance, dizziness, slow reaction time, feeling of movement when the car is parked and the list goes on. I feel depth perception is very important while driving and I am afraid I may hit another car or run into something.

I have bumped my bad knees into tables or chairs I thought were further away. I feel as if I was in a glass shop with delicate china plates an cup I may break a bunch of things. I used to be very precise and never run into things or knock anything over but in the past few years it is increasingly getting worse.

Hi,
I too have hand tremors, that drive me crazy. Although, I don’t have problems with depth perception. I’m sorry to hear, that you have to put up with that. It does make it difficult to navigate the world we live in.

I believe I have had Lyme Disease since 1985, when we camped out, in the PA Pocono Mountains. I never found a tick, nor did I ever have a bullseye rash. However, that summer, I had many mosquito bites. I know some say you can only get Lyme from a tick bite, but I believe you can get it many ways. At that time, I was healthy and my immune system was strong.

In 2000, I was sick with EBV (Epstein Barr Virus) two times in two months, during the summer. I believe that weakened my immune system, and the Lyme spirochete was given the opportunity to flourish. About a year after that, I started noticing mild hand tremors, severe burning and pain in my shins, going down into my feet, generalized muscle and joint pain, and mild fatigue.

As the years went by, all of those symptoms worsened and I developed RLS (Restless Leg Syndrome). In 2004, I was diagnosed with Fibromyalgia, but told by the Rheumatologist, that they didn’t know what caused FM, and didn’t know what to do for it, except give pain meds. They had already tried all the standard “neuro” drugs, but one by one, I gave up on them, because they didn’t really help, and had awful side-effects.

In 2005, I finally quit my job, as a Home Health Nurse, when one of my patients described her Lyme Disease, and I realized she was describing me. I went to her LLMD (Lyme Literate Lyme Medical Doctor), who immediately diagnosed me, both clinically and by blood test. I also tested positive for Babesia, which he treated with Malaria drugs. In 2006 my LLMD left the state, to practice in another state where they wouldn’t persecute him for “off-label” use of antibiotics. So, long story short, I didn’t have a doctor who knew how to treat me. So, without a doctor who was even willing to try to help me, I felt like I was in a downward spiral, into a deep, dark hole. I slept 16 hours a day, and the other 8 I sat in my recliner, dozing on and off. My sweet husband would go to work and then come home to cook, clean, do laundry and the grocery shopping. It was a true nightmare, that I wouldn’t wish on my worst enemy.

I suffered steady decline until I finally found a FM doc, who tested me, and determined that I had a non-functioning immune system. He gradually built up my immune system, major organs and hormonal system with herbs, supplements and neutraceuticals (plant based bio-identical hormones and meds). It took almost a full year, before I even started feeling better, but eventually I did start to improve.

He also tested me for Lyme and with the blood test he did, I tested high positive for Lyme, but no Babesia. One of the tests he had me do, was to do a visual test for neurological damage. He was shocked by how poorly I did on the test. Based on that, he said he was fairly certain, that the hand tremors and burning shin/ foot pain is related to neurological damage, caused by the Lyme Disease.

After a year, I had to stop going to him, since it was very expensive, and not covered by insurance, because most insurance does not pay for alternative treatments. But, have continued to follow some of his recommendations, and do research for other improvements. I can say that I am about 80% improved since I first went to him in 2008, at which time I thought I was dying. I really think he saved my life.

I am sad to say that my neurological damage doesn’t seem to be getting better though. My had tremors have progressed to the point, that I try not to hand write anything. If I do have to write something, it is easier with a No. 2 pencil. Even then, I have to write very slowly or my writing turns into scribbles, that even I can’t read. If we are out and about, and someone asks me to write something down, I ask them or my husband to write it for me. I have noticed that when I am tired or stressed, it is a lot worse. And, if I try to write for more than about five minutes, my writing turns to scribbles, and I have to stop.

An interesting thing, is that I don’t have much trouble typing on a computer. I haven’t tested my self lately, but at one time I could type 75 words a minute. Now, I am guessing I type about 60 wpm. Occasionally, I do notice, that I double type letters, and the space bar goes a bit crazy, at times. But other than that, I am surprised that I can type as well as I can.

In addition to not being able to hand write anything, I also find that the tremors get in the way of doing simple fine motor skills, like keeping food on my fork (aaarrgh!) I have actually gone to using a soup spoon to eat, and even at that I drop a lot of food in my lap. I have started using a napkin (as a bib), and sometimes I have to grab the spoon with both hands, and then I can stabilize it enough to keep the food on it. I also find that I tend to drop things as well. Probably not as much as you do, but sometimes, I will be holding something, and without warning it drops out of my hand. It’s very frustrating. Sometimes, I will have to try doing a task five or six times, before I can actually do it, or go to the two handed approach. It definitely takes a lot longer to do things (like cooking) now, than it used to.

I have been an artist all my life, and am no longer able to paint, draw or do my beloved calligraphy. I have always loved taking photos, and that now is my only real source of creative expression. However, the only way I can do that, is to use a tripod, since the tremors, cause all my photos to be blurred. But, I am grateful to have my photography.

I could go on and on about the things I can no longer do, due to the hand tremors, but suffice it to say, I get very frustrated at times, because it seems to be getting a lot worse,

Wow sounds all too familiar. I was infected with Lyme, Bart and Babs plus some others in about 1984. As for the mosquitoes they carry all sorts of bad things including the coinfections like bartonella and babesia. I was out on a hunting trip in the middle of a flooded field and I was bitten over 1000 times by mosquitoes. I have pictures it was horrible. I looked like I had bites on every piece of the flesh of my face, neck, arms and hands. I could have been reinfected with many diseases then too.

Like you I never had the bulls-eye rash. I do remember well being bitten by 3 ticks and all of them were embedded and filled with blood. I was scared and ripped them out (wrong thing to do) but this was the early 80’s and nobody knew much about Lyme or coinfections then. I still have the head of a tick embedded behind my ear. After being bitten I was sick a lot and had mystery illnesses or rare medical issues often.

Now the Lyme and co’s have caused Fibromyalgia, CFS, EBV, neuro issues, arthritis, thyroid issues, spinal issues…….long list. It amazes me that this tiny cork screw of a disease can cause so much damage. It is hard to get better when you find a new issue every blood test or MRI.

I figure since I cannot work I would love to do photography. I used to be a pretty good artists but I can no longer use a pencil or pen the way it should be used lol.

I am glad to hear you are doing a little better and I hope you continue to heal. Thank you for sharing. Take care.